This project is under way, and will run until August 2023.

  • Run by the University of Edinburgh.
  • Aiming to improve care standards for people with poor prognosis cancers in Scotland.
  • Will use real-world data from national and regional datasets along with patient- and carer-reported experiences to examine clinical pathways and outcomes, and inform shared decision making.

Around a third of people diagnosed with cancer each year in Scotland survive less than one year. Although there are agreed care standards and national comparative audits for better prognosis cancers, there is a lack of evidence on the benefits and harms of current care pathways for people with poor prognosis cancers (PPC).

This important evidence gap leads to considerable variation in practice and inpatient experience, with some people with PPC missing out on the benefits of care and others receiving end-of-life care that is inappropriately medicalised.

By using real-world data from a range of national and regional datasets, this project run by the University of Edinburgh will examine clinical pathways and outcomes for people with PPC in Scotland, with the aim of improving the standard of care they receive.

The study will examine cancer audit and registry data from around 10,000 people with PPC across three health boards in south-east Scotland. It will also perform in-depth linkage analysis on clinical and administrative data for one of these health boards in order to describe patient management in detail.

Patient-reported experiences from five Scottish cancer centres will provide meaningful insights into aspects of care that are important to people with PPC and their families. This will feed into the development of dedicated patient and carer information resources, and support tools to inform shared decision making.

The comprehensive evidence base generated by the study will educate policymakers, clinicians, patients and carers about the likely outcomes of treatment options in PPC, and help to develop new standards of care that have the potential to be extended throughout the UK.

Contact details

For more information about this project, please contact Marie Fallon, St Columba's Hospice Chair of Palliative Medicine, University of Edinburgh.

About this programme


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